What a difference a (few) day(s) make.......

Sarah again. Well what a difference a few days make. There was considerable activity on the seismic scale last week that left me reeling as you could probably tell from my last post! Thanks to all of you who got in touch to support me, it really touched my heart, a special mention for Kevin who sent me a lovely bunch of flowers (and Jayne doesn't mind!) - there you go a namecheck at last - all the cards and messages were also a great support! It was good to have a little bit of a rant as at times I feel I sometimes try too hard to be enlightened about the whole situation. It would be distinctly abnormal at times not to get upset - this is after all a profoundly upsetting circumstance to be in.

The fact that the fundraising game broke the £1k mark also uplifted both of us especially as we are not only getting donations from loads of people that we know, love and value but also now from people that we have not even met which is great. We are planning to widen the net this week by seeking some publicity from the local paper and Macmillan so will let you know how that goes.

Dave has still had a few ups and downs in the last few days and pain management is definitely becoming more and more problematic so we will need to seek advice on that. Fortunately we had few plans for this weekend which enabled us to go with the flow a little and had little pressure to get too many things done. Our general domestic chores were interspersed yesterday by visits from Claire and Hattie and later on Allison and Michael. Dave also took the opportunity to give me some DIY training. We had had to buy a mirror for Emma's bedroom so that I would stand some chance of getting a couple of minutes in the bathroom on a morning, as her make up application is becoming an ever increasingly complex and time consuming task. I am generally quite handy around the house and good at things like decorating but had never held that manly tool the drill in my hand before. However, with a bit of coaching from Dave (not generally recognised for his DIY skills I have to say) the thing was on the wall. The emotions after completing the task were weird -a sense of achievement in completing the task but a few tears for the fact that I need to learn these tasks for when Dave is not around. Still at least then I will get possession of the drill which he has jealously guarded for all these years. And maybe even the electric screwdriver...........

Today was also a lazy day. Managed to get to the gym this morning. I don't get there very often now for obvious reasons but I do find that some physical exercise when I can get it does help my mental state. Again going to the gym, swimming and any other physical exercise are all tinged with sadness as they were things we always did together, but it did clear my head. This afternoon we managed a couple of hours out at our friends Tricia and Rob's house for Sunday lunch. I really need to give them both a mention as they are stunning friends. Tricia is a slightly mad and very funny Irishwoman who is so kind I can be moved to tears just at the sight of her at the moment, as she is always there when I need her ready to do what is needed. Rob is a born again archetypal dour Yorkshireman, but we all know that despite that cool exterior he is a complete mushball who would do anything for anybody. They have both known very sad times as their gorgeous first baby Callum died very suddenly and without explanation nearly 15 years ago. Having had that kind of experience they cope well with people who are having difficult times and there is an understanding between us. Their house is a great place to go for us as it doesn't matter what is going on with Dave at any time, they are so understanding that we can handle anything. Today we just had a nice lunch and a good laugh which was just what we needed.

So what will this week hold? Hopefully not too many surprises unlike last week. Cassette change tomorrow but no change in dosage so the wheelchair should be in abeyance for at least a week. We do, however, need to chase the zimmer frame which has not yet been delivered. The weakness in Dave's legs means that he needs something a little more substantial than the walking stick, especially after a boost from the pain catheter.

A Life More Ordinary

Miles Kington had a regular column in The Independent, and just before he died of cancer he started a column like this: "When you have cancer, you realise that any person who starts a sentence with the phrase "When you have cancer" should be shot." Or something like that anyway.

It can be terribly easy for a person who has cancer to think they have been given the opportunity for some incredible insights into the nature of life and living - you know, the fact that we all know we are going to die is one thing, but a person with "terminal cancer" is forced to live with the fact of their own mortality every day, and that this provides some special way of being, and a sense of urgency to life. I know I've already said that, personally, all I crave these days is a life so normal it would make a spinster librarian look dramatic and interesting, and I also don't think being "terminal" suddenly confers upon me some special status, and certainly not wisdom.

Yet there are a few things I've noticed since getting ill, and, as I don't think they border on the "When you have cancer..." kind of self important pontification, I'll risk writing about them. The first is how life becomes compressed, like a squeezed concertina, where the ups and downs experienced by every human being become higher and deeper, and far more frequent. It's like my life and Sarah's have gone from an emotional seismometer measuring the seismic activity in Wales to one in the centre of a volcanic crater in the Phillippines! The pen marking the activity went from a relaxing somnambulent and hypnotic tidal movement of mini peaks and troughs, to a frantic and manic scratching struggling to keep pace with the rapidity of variations - in a Hollywood movie, you'd know that the hero is just about to have to run through/over a steaming cauldron of sulphur to rescue a scantily clad damsel in distress from the path of flowing lava about to envelop her.

The second is a slow motion "life review". If your life is supposed to flash before you when you experience sudden death, then I think those of us facing a death at some time in the not too distant future (of which the doctor's have kindly made us aware) seem to experience the same thing, but in a very slow flashback. Events in my life are coming back to me which were long since forgotten! And not even very important events, the ones that a novelist would describe as character forming and explaining the actions of their protaganist. Things like: the girl in infant's school who ran after me trying to give me a kiss (and looking at the photo of the manly hunk of flesh above, who could blame her) who had two snot candles running onto her top lip such that being caught would mean for ever being traumatised by the sight of a discarded handkerchief; or the time in an English lesson at school when I temporarily forgot how to spell the word "who", and wrote "hooh" in the essay; or when I went to a Lord's test match between England and Australia on my stag do and somehow ended up trying to flick peanuts up the nose of my Best Man as he lay sleeping on the pavement recovering from the excitement of the day (and perhaps the amber nectar he had been quaffing).

The third thing I notice a lot more is old people. God they can annoy me now, with their 80 plus years of life and walking about like a flitting sprite when compared to my laborious walking stick pace. In our street, there is a man who I used to feel immensley sorry for as he tottered up to the corner shop and back with his walking stick tapping out a military tattoo: now the bugger overtakes me regularly as I make the same trip with my own stick - God the temptation to trip him sometimes is overwhelming!

Then, of course, joggers! How I hate those bastards flaunting their health at me as they breeze past in their tracksuit bottoms and i-Pod headphones - especially the women, who all look wonderfully fit and sexy, deliberately rubbing my nose in the fact that I have a permanent urinary catheter and complete lack of sexual function and couldn't run out of a burning building, let alone go for a few miles healthy jogging.

I cannot believe the amount of things I just miss! Like kicking a football (to do so now would only result in a pratfall), or sitting on a chair for more than an hour to watch a movie or a play, or riding my motorbike (sadly sold in '06 when I was first diagnosed and I knew I wouldn't enjoy sitting on that hard seat for three minutes, let alone long enough to ride out somewhere and find a bendy road), or just cycling along the river path into York with the family to go shopping.

And of course, I notice cars parked in disabled spaces without the badge being displayed. The moment I was diagnosed as incurable, I was given a blue disabled person's badge for the car, and at first I thought I'd be a fraud to ever use it. Now, it's actually damn useful, and without it I'd be much less able to get out and about. My mate Nick told me of a friend of his who, being disabled from polio at a young age, once told a fellow Londoner that he had a blue badge only to get the response "You lucky bastard!" - I get looks communicating the same thing when I'm in York on one of those busy days and can get parked without having to queue in the car parks. I notice shops without ramps, as I notice any set of stairs or even just one step. Our upstairs bathroom and toilet for instance has a step down into it, and I have to be careful not to give myself a boost of the drugs when I'm in the bathroom for fear of being stuck there for twenty minutes unable to tackle the 0.3 metre mountain in front of me.

The final thing (and this does border upon the pontification of a prat, so I'll have to be careful) is how much conversation I hear during the day is about absolutely nothing of any import at all! Snippets come to my ears as I'm sitting in Starbucks (globalisation of capitalism be damned - their stools are the perfect height for me to half stand, half sit drinking my americano), and I laugh at how significant people get to sound as they discuss the most ridiculous inanities: the business bloke on his mobile talking about "synergistic qualities" of his company and that of the bloke he's boring to death on the other end of the line; the woman complaining to her friend about the fact she's got to cook a meal for 8 on Saturday night (I want to shout at her:"Uninvite them if you don't want to cook, you daft cow!"); or the couple of younger women (girls to my eyes really - any female under thirty looks like a girl to me) talking about the clothing they've just bought and are going to wear on Saturday when they go to the Gallery (I think it must be a night club in York - what I still call a disco, to show my age).

There's nothing wrong with it, and only some of it I find annoying. People complaining about things they actually have a choice about is the one thing guaranteed to get my goat! I tell Sarah I want to go up to some people and say, "Well, thank F*** you don't have anything serious to complain about like terminal cancer, 'cause then your life would really suck, wouldn't it!" And, truth be told, I can usually laugh at most of it.

Last year, one of my close friends Mike said, "God listen to me moaning! You're the one with something to really concern yourself about!"

I said, "Mike, I only have one thing to worry about. Before this, I had a thousand and one things I'd worry about, like work stuff, paying the bills, whether or not Crystal Palace would get demoted again. Life's so much easier when all you have to worry about is staying alive." So, honestly, the trivia doesn't bother me, but I am really amazed at how much of it there is filling the conversational space!

And before I go this time: thanks so much to all those people who have dropped a line to Sarah, or given us a call. It is so good to hear people asking after not just me but her and Emma. Sarah faces the prospect of having to look after her ailing husband, and possibly comforting her daughter while she too is grieving. Please, keep letting her know she is not alone!

Thanks again to all those who are donating to the cause, and a really big thanks to Wendy at Triumph, who put the link onto the company website: believe it or not, I have actually had emails from some of the people I did some training for, saying thanks for the training! Bugger me! You mean, some of it actually made a difference, and what's more, some of it even worked!!?? Thanks for the thoughtfulness in getting in touch with me. If anyone else wants to do the same, the email address is at the top of the page.

Sarah says "It's a ridiculous life"

Thought it's a good time for me to come back on line - just after my hubby has bigged me up!
Not sure in many ways if I want to write a post as this last week has been difficult to say the least and certainly has not had a lot of laughs! In summary, managed to go out Friday night and feel almost normal for a few hours. Saturday a short trip to PC World to look for a laptop for Emma's christmas present occurs like a Herculean task for Dave - I have no idea how he gets in and out of the car for a start. Dave not very well that day so run around like a maniac for the rest of the day doing "housey" stuff - have a couple of hours "quality time" watching the X Factor on Saturday night - the programme is only made watchable by the hilarious running commentary we make up for ourselves and I find myself wondering how far up their own arses the judges can crawl - Danni crying cos Louis hurts her feelings - **** off!

Sunday Dave is very very off colour and very weak and it feels like he is rapidly fading away. We have a couple of hours on our own whilst Emma is at theatre group and we try to go for a walk but end up coming back after approximately ten minutes and he goes to bed for a while. We had hoped to go and see Quantum of Solace but that was definitely a bridge too far and has been for Dave ever since the film was released!

Monday come back from work at 10.30 to take Dave to the hospital. He insists on driving to the hospital in case it is his last ever driving experience. Fearing he will return from the hospital in a wheelchair we both check out mentally - leave all his tablets at home and no disabled badge in the car which necessiates me returning home and then driving back to the hospital. Try to go for a coffee out together after the hospital and when we eventually get to our chosen spot (a new place I have been trying to take him to for approx 8 weeks) it is very full and no room for Dave to be comfortable so we leave, but I feel like shouting at everyone to leave and make space as they can come back anytime but we may not have the chance for many more coffees out together. Come home as he is feeling too off colour to try anywhere else, thinking we have made it through the cassette change and at about 5pm he ends up stranded in the kitchen due to his left leg not functioning for a period of time . Claire comes round to give me an Indian head massage that night and I cry into the massage chair for an hour or so - she can see how upset I am and how poorly Dave looks and snivels in the background (what a pair!). As the hours go by Dave and I realise that the increase in drugs is numbing the legs but doing naff all for the extreme pain in his pelvis. Monday night for me is almost completely with no sleep for me as at the times when he is not awake and in pain he is moaning in his sleep with pain.

Get up on automatic pilot and go to work Tuesday morning and this normal cheerful and chatty person can barely speak to anyone for fear of "losing it" as all I can think about is the hospital appointment in the afternoon. I burst in to tears as I walk through the door at home to take Dave to the hospital. Anne the doctor is lovely and tries to reassure us that the worst of what is going on is probably related to a urine infection but does confirm that the tumour is significantly progressing. Feel a bit upset that people call so rarely these days after hospital appointments - in the good old chemo days people rang non-stop - now the news is continually getting worse it would seem most people can't face it or don't want to bother us but it does leave you feeling a bit on your own at times. Dave has a bit better night but uses lots of boosts so a weekly trip to the hospital has now become necessary which is a nuisance as we prefer to avoid the place as much as possible.

Go back in to work Wednesday morning. I have a very busy job and having a sizeable chunk taken out of the previous two days for hospital leaves me with far too much to do so now I am knackered! Go for my fortnightly hot stones massage with my friend Margaret tonight after work and end up snoring on the couch! Margaret is a spiritual healer as well as a massage therapist so delivers me some great healing so I feel quite a bit better afterwards and certainly have more energy.

I have a general discussion with Margaret about how I can try to take care of myself as in recent weeks I have really been feeling the strain. My back and neck have been extremely painful (requiring several chiropractor visits) and I am suffering regular headaches and stomach pains and just generally feel exhausted. I find magazines that discuss how to relax and relieve stress highly amusing these days as coping strategies like having a warm bath, deep breathing and yoga don't even really touch the sides in these situations! Work is becoming more and more difficult for me but giving it up at the moment would feel like giving up on Dave and neither of us are ready for that. Sadly we also have some major financial concerns as I do not earn very much and Dave is self-employed so has no sick pay and we have no major windfalls to help us out as some others sometimes do in this situation. It seems almost obscene to even have to consider money in this situation but unfortunately it is a grim reality for many cancer patients. The only blessing is that we did the downsize thing a few years ago so are not saddled with a massive mortgage and being fairly non-materialistic souls we can manage on not too much money when we need to.

Have reread this and not sure I should post this as it is not particularly insightful or burst at the seams funny but it is honest. This is what living with people with cancer is like at times. In summary ******* scary! Will just have to see what the next few days hold.........Sarahxx

47 With a Zimmer!

So that's resolved then. I've called Dr. Hall and told him I will need to change the cassette on Monday, as I am using too many boosts for it to last beyond a week today. Last night, I took three boosts between going to bed at 11.30 and waking, because the pain was a little too high again, and does not seem to be infection based. I've also called Eleanor who is the physio attached to me, and requested the walking frame be made available (preferrably before the weekend, as I tend sometimes to be too immobilised to be safe walking about with just the stick to support me), and the self propelling wheelchair: the next increase will almost certainly mean I need it occasionally to go out with the girls and not be walking so slowly on my zimmer I delay reaching our destination by a few days!
It will be a landmark step, as I've mentioned, but I don't expect to need the chair permanently just yet. I will still be able to walk (probably a bit stiff legged) around the house, and with luck, manage the stairs for a while yet. If I can't, well, we will simply have to ask for the bed to be delivered and installed in one of the rooms downstairs. Fortunately, we have a downstairs shower, so I won't have to go unclean on top of everything else.
Now I've noticed the last few entries have been all quite factual, and that reflects what happens to both Sarah and I when we have a few medical appointments one after the other. We both seem to let the facts sink in a little before anything like assimilation takes place in terms of our lives and how to continue to live powerfully in face of the new circumstances. It's one of the reasons why visits to Maggie, our homeopathist, are so useful: it's not because the curious preparations she gives to both us might have any effect (they may do, I really don't know) but because she is a person who asks questions about how we are and how we are both reacting to the situation right now. It helps me, and I think Sarah, to contextualise our experiences, and to come to terms with what we have made all the latest news mean, and thereafter, how we can interpret the situation in a way that has us both be supported and feeling able to cope. She is also a person who interprets the world through what I'd call a spiritual filter: she doesn't take things as merely facts, or regard human beings as merely biochemical machines, but beings with a non physical element, and, dare I say it, a spiritual journey to accomplish.
I've mentioned before, I think, I have spiritual beliefs too. I'm not a member of any religion, although I have often described myself as a Buddhist, just to keep the conversation short and not too weird. Most people think they know what a Buddhist is, so I avoid a lot of complicated questions by calling myself one. So for now, let's just say I am a Buddhist, (it's close enough anyway), and I can tell you then how I am able to interpret the latest news and my cancer as a whole.
People often describe Buddhism as fatalist, because it is so accepting of what is so. I, for example, know that my circumstances now could not possibly have been any other way. The reason I know that is a bit hard for some people to understand, because it's a bit simple. It could not have been any other way, because THIS is the way it is. Nothing I could have done would have stopped this set of circumstances occurring, and that is what some people think of as fatalistic. Personally, it's just common sense to me. In the same way, whatever the future holds will be exactly what it holds: nothing I do now will change the circumstances I am in at some point in the future. Why? Because when I am there, however the world is will be the way it is then. Did that make sense? Probably not. So if it turns out I am in a wheelchair in a fortnight's time, that is exactly where I am meant to be, and, as Maggie might say, it is exactly where your spirit or soul wants you to be too, so that it can experience all that it is meant to experience on it's journey this time round.
That is how I find myself able to live with the set of circumstances I am in now: it is, in some way, exactly what is meant to be going on for me. If I survive (which I still hold to be extremely possible) then I was meant to, and if I don't, I was meant to die.
There is something else that helps me live happily now, and that is the love I have from Sarah and Emma. Last night, for example, Emma was watching Sarah massage the emollient cream into my legs to help control the swelling and keep the skin from disintegrating further. I could see her glancing away from "Survivors" on the telly to my legs every so often, although she didn't know I was watching her (gotcha, sweetheart!). When the massage was done, and I put my track suit bottoms back on, Emma said to me "I love you." It not only lifted my heart, it nearly wrenched it in two, it was so simple and honest.
Then there is Sarah. I want some of you to know something of who Sarah really is, because for some people she still occurs as "Dave's Wife", and not the full and amazing human being she is. Sarah is the kind of person who, having lived through the miscarriages she and I experienced, became a counsellor for the Miscarriage Association, and a press volunteer giving interviews to the press about how the MA helped us both through. She is the kind of person who, when her mother was dying from cancer, badgered the health authority every day for a fortnight or more to get her mother a hospice place through the NHS, who travelled the 400 plus miles round trip almost every weekend to visit her mother, and who arranged for her mother's care home when she could no longer live alone. She is the kind of person who, when her husband first had a colostomy, sat on the bathroom step and forced herself to look at the hole in my side to come to terms with it and to understand what I felt like every time I looked in a mirror. She is the kind of person who, when her husband was declared to be incurable, went onto the internet and searched thousands of pages to see what drugs were being researched in other countries and what alternative treatments people were using that seemed to show some chance of success. Every day she reassures me that she will eventually recover from my death should it happen, and that she will be fine one day, so I don't have to worry. She also tells me that my dying will be the worst thing she has ever had to face, and yet that she will face it and help Emma through it too. That is a fraction of who my wife is, and I would love even a fraction of her. The fact I have and hold the complete person called Sarah French is one of the greatest gifts I could have been given, and I cannot, even though I may be dead some time soon, regret a life in which I have been given the chance to be her husband.

"My, Mr. French, That is a Large One!"

Excuse the 1950s seaside postcard humour, but the quote is almost word for word.
The appointment with Dr. Anne Garry was at 2.30 this afternoon, and, although my post was very positive yesterday, after it had been written, a few things occurred which made the meeting today a little more laden with significance than it otherwise might have been.

The first being that, soon after writing the post, I had to give myself two bolus doses (the boosts I have referred to), as even at the new improved levels of concentration, the pain was still breaking through at regular intervals and at unacceptable levels. The second of these boluses had left me almost entirely unable to walk, and as Sarah was home at the time to witness it, things became very emotional as we both thought I would very quickly need another increase in concentration (as soon as next Monday), and that the next increase would be the one that pushed me over the edge.

Secondly, last night saw me jumping out of bed twice as the pain broke through and woke me up, requiring immediate boluses to get the pain to a level at which I could return to sleep.

With these two elements combined, Sarah returned from work at 1.00 pm this afternoon and immediately began to cry, facing, as she believed, my imminent decline. I was able to reassure her a bit, because during the morning the pains had abated, and I'd had no need for the boosts. Still, the meeting this afternoon could still have been one where the news was unremittingly poor.

As it was, we were seen by Anne at 3.00, and as usual there was a student doctor in tow as she is not only a very proficient doctor, but a damn good teacher too. As usual, I was asked to run through the symptoms and the levels of pain relief to see if there were any significant changes to worry about. The new developments to tell her about were the pains in the groin (which have only shown up since our previous meeting), the pains last night (which I said I believed were due to infection, and that I had taken antibiotics in higher doses yesterday to tackle it, and it seemed now to be working), and a sensation that has only developed in the last two days of a curious electric shock sensation running from my left foot to almost the crown of my head!

Anne then asked if it was OK to see the tumours on my behind, and it was at this point she said the words, "Yes, that has grown significantly, hasn't it?" She examined both tumours in the groin, and again, the one on the right was noticably larger than before.

The summary at the end of the meeting was this: the electric sensation is due to the tumours beginning to touch nerves in the pelvis, and hence the shooting sensations. The pain levels were probably due to infections and the antibiotics seemed to be working as the accompanying odour (I hadn't mentioned that had I?) was hence much less than previously. The next level of pain relief through the cassette would probably mean at least the walking frame was necessary, and perhaps we'd have to move from a fortnightly change to a weekly to ensure I could give myself sufficient doseage to eliminate the pain as much as possible.

I am now going to wait for a day or two to see how well the pain relief is working, and to confirm that the infection was a cause of the higher levels of pain yesterday. If all is well, I won't need to contact Dr, Hall to bring the cassette change forward to this coming Monday, but wait the two weeks as usual. If all is not well - well, I'll cross that bridge if I come to it.

Sorry I can't be clearer than that, as I know some people are on tenterhooks when I post something that could imply a potential problem, but I am afraid that is what my and Sarah's lives are like now - we do not know what is going to happen from one day to the next, and we just have to make the most of it.

Still Dancing!

Well, thank F*** for that! No wheelchair! After last night's post, I thought I'd better let you know in case any of you were concerned.

Dr. Hall changed the cassette this morning, in pretty much record time actually, as he rather sneakily came out of the theatre where the change usually occurs, and conducted the procedure in the "waiting room" (where I was the only person waiting) allowing me to leapfrog the previous patient whose procedure was going to take an hour compared to my 5 minutes. "We'll get you in and out quickly, shall we?" Dr. Hall told me as he nicked one of the packet of Bourbons left out on the side for the patient's use. I delight in the fact that he is not only an apparently good doctor, he is a pleasant human being who actually talks to his patients and builds a relationship with them.

The change was quick and uneventful in terms of my ability to walk or function. Now I have to monitor how the pain management goes for the next two days, and then call his secretary in order to let Dr. Hall know whether the concentration needs to be upped again. But the initial fear, of moving one step closer to being permanently bed-bound, hasn't happened.

I did think to myself after last night's post, complaining about the possibility of being in a wheelchair is an extremely selfish concern, and to some ears would sound very petty - after all, many people have had to face it and coped remarkably well. The reaction I had to my colostomy was tempered by a similar realisation: for many people, the creation of a stoma in the side and use of bags to collect waste material, is actually an extremely welcome procedure - for people with Crone's disease for example, a colostomy enables them to live without terrible pain and the embarrassment of faecal incontinence. That having been said, mind you, I am pleased I don't have to use the chair just yet!

Tomorrow afternoon sees the appointment with Dr. Anne Garry, the palliative care doctor. Sarah or I will add a post tomorrow to let you know how that's gone.

The Waiting

I've mentioned before that tomorrow is a cassette change day; they tend to be every two weeks on a Monday simply because that is how long the 250ml cassette contents lasts given the rate currrently per hour is 0.5 ml, with the booster set at 0.6ml every time I use it. The fact tomorrow is also going to see an increase in the concentration of the local anaesthetic (bipuvacaine) adds a certain frisson to the whole event. Sarah nearly always accompanies me to the hospital for a cassette change, but when there is an increase to either the morphine or the bipuvacaine, she definitely ensures she has the time off to take me and wait for the change to be complete because we simply don't know what effect it will have. The increase tomorrow is small, but there is a still a concern as to whether it will result in me having to use the walking stick permanently or not, or, even worse, I have to move on to the next step which will be using a walking frame. Although I am confident the small change will have little effect, there is still a doubt, and that makes the waiting all the harder. Even asking the doctors wouldn't help to clarify matters, as the only answer they can give is the one we have heard so many times before: everyone has their own individual responses, and to predict one person's is impossible, even though a history has been built up of the reactions to the changes thus far.

Now, in this documenting of my "journey" (I wish now I hadn't used that word, as it seems every celebrity on either "Strictly", or in the jungle, or contestant in "X Factor" seems to have been on a flipping "journey"!) I have promised honesty, although it may not result in things everyone wants to hear. The fact the increase is due tomorrow is, in spite of the slight fear of increased disability, something I welcome for the simple reason the pain I am experiencing at the current concentrations is in itself debilitating. A fortnight ago, when the then new pains in my groin were only a week or so old, they were relatively easy to put up with, but now their intensity has increased to such a point that I require to give myself a boost almost the moment they begin, and even then there is fifteen to twenty minutes of severe discomfort before the drugs successfully kick in. In addition, the intensity of what I call the "internal pain" (which is located about 5 cms above where my anus used to be) has reached a level where I can be temporarily stopped in my tracks. I let out a groan as it hits, and have to stop whatever it is I am doing as this pain takes over my whole being for a second or two, and then subsides to the point where I can think. This has meant I have, in the last week or so, slept less well as I have to wait until I am almost falling asleep on my feet to attempt getting into bed and going to sleep, and am trying to ensure I have had two boosts one on top of the other (they are separated by a 45 minute gap for safety reasons) so the pain will not prevent me nodding off. Once asleep, I stay that way for two to three hours, then wake up and go to the loo and ensure I give myself another boost before I get back into bed. I'll then wake up another 1.5 to 2 hours later to do the same thing, and this will go on until about 6 or 7 o'clock, when I have to get up because the strength of the pain requires me to take the oral medication.

As a result of all this nocturnal activity, I have become gradually more tired as the week progressed, and now, on Sunday afternoon, have had to try to go to sleep for an hour merely to feel something close to human. I haven't mentioned previously that sleeping during the day is always difficult for me. That's because in the evening I take some amitriptyline tablets, an extremely effective nerve drug I have been prescribed to deaden the nerve pains I experience whenever I lie down. The reasons for this pain were very clearly described to me for the first time by Dr Hall, the guy who now changes the cassette for me every fortnight. He told me, "The nerves at the base of your spine spread out from either side of the vertebrae like a girdle or an incomplete rib cage. Normally, these would almost entirely encircle the rectum, but in your case where that is now missing, the very next thing they touch is the prostate, and again, in your case, this is covered by tumour, and whichever position you lie down in, the tumour is always going to make contact with these nerves and cause you intense pain. That is the reason you need to take the amitriptyline." The upshot of that is I have to be very tired to be able to nod off to sleep quickly if I try to get a kip any time other than an hour or two after taking that particular drug. Fortunately, this afternoon, I was tired enough, and grabbed a half hour "power nap" (only the Americans could have come up with THAT one!) and now feel almost human again.

Another consequence of the increased pain has been Sarah and I getting ever more present to the seemingly inevitable time when the bed will be brought into the house and I'll be in it 24 - 7, which in itself leads to the thoughts about my dying. Even though I am able to retain a belief in a miracle, the size of that miracle gets bigger with each passing day, and the proximity of my entirely plausible death moves that little bit closer. This afternoon, before I had to sleep, Sarah and I took a short stroll down to the Millenium Bridge, and the talk turned all too naturally to what the future holds. As the bridge was crowded with students watching a rowing competition (I felt so sorry for them all in their vests and shorts as even with their energy expenditure to warm them, the temperature must have only be 1 - 3 degrees above freezing, and on the river the winds are completely unsheltered!), we talked in lowered tones about when the wheelchair would be needed and what the ultimate future holds. For me, the future stops at the point at which it becomes hardest for Sarah: my death is going to be her worst of all possible times - worse even than watching me suffer with the pain now - and we both know there is absolutely nothing we can do about it, other than cry.

In this way, a relatively simple and completely painless procedure and hospital visit results in a period of waiting charged with the highest emotions and possibly darkest fears brought into the open. I know I may sound unreal saying I can believe in the miracle, and perhaps I do so only to prevent the machinations of my mind arriving at a point some time in the future when Sarah and Emma are attending my funeral, or, even worse, reaching some time in the future when the memories of both my illness and death have begun to fade for other people - as they surely will, simply by virtue of the fact that everyone has their own life to live and own problems to face daily, leaving the two of them almost completely alone. I try to shut out any such visualisation, fearing my merely thinking about it can make it more plausible, but, paradoxically I also have to face it, because how else can I understand what Sarah is experiencing and fearing?

This may make this Sunday sound like a bloody horrible day! But, because we do talk about it and we both face what the other has to face, we eventually reach a point where the tears stop, and the present moment returns, and we can once again experience and enjoy the precious time we have together now. Time that is not as carefree as we have experienced in the past, or as unburdened as we have experienced in the past, but it is time together nonetheless.

And To Think, I Was Worried for a Second!

Well, according to the Independent, and several other esteemed publications featuring those life style pages, I am going to live to 110 years old! The article I read recently mentioned a variety of aspects impacting the health and longevity of people in the affluent West, from diet (little red meat, plenty of fish, fruit and vegetables, while drinking plenty of water), consuming some alcohol (red wine especially because of the anti-oxidants), having a positive outlook, having a spiritual belief, excercising regularly - all that kind of stuff we have been battered over the head with in recent years as the obesity of our nation catches up with that of the lardy Americans. And, as I say, it turns out that I am going to live for another 50 years! Maybe even 60!!

Now I mention this merely to contrast it with another position, and one which is quite insidious in my opinion, and could in fact be harmful to people in my situation and their families. Not too long ago, Emma was in a class where they were discussing the topic of cancer, and I am certain that Emma, in that group of children, was by no means the only one who has been impacted by the disease, as so many people get it in some shape or form. To cut a long story short, the conclusion of the lesson (or "the Key Learning Point", to use the educational argot) was this: eat healthily, drink wisely, exercise, and you will not get cancer. It only takes a second to flip that on its head, doesn't it? The way that's stated, it logically follows, whoever has cancer did not do that. Whoever has cancer was a bad person who did not eat sensibly, or do what they should have known was best for them, and, therefore, they only get what they deserved!

Fortunately, Emma is a smart person, and she did not jump to that conclusion, partly because she has seen me over the years with my sensible diet (Sarah and I eat a lot of vegetarian meals, and have red meat only rarely), and although I have had the occasional tipple too many, I have not been a person you'd confuse with a Keith Richards - even in my more hedonistic moments!
If Emma's teacher had thought about it, she may have realised what she was saying, but the fact she didn't makes me bloody annoyed, because then, if I go up to a person who has been taught by someone like her, then I am going to be classified as a fool. I will have become someone who was irresponsible and incapable of self control, of self discipline, and therefore only got what he deserves. It's almost a criminalisation of people with cancer!

So, please, if you come across people who think so simplistically, tell them it is possible for even quite healthy people to get cancer, people who have not done all the "bad things" in their life we are told by our nannying "betters" not to do.

It could just be bloody bad luck! Before people get carried away with pointing the doubting digit of defamation, remind them it could just be the Fickle Finger of Fate at work!

It is all too easy to go down the path of guilt, even for someone like me, who is actually completely certain there were no aspects of my lifestyle that led me to this point. For others, whose tendency for guilt borders on that of a person raised by a sect of especially strict Catholic nuns running a correction centre, to hear such definitive statements about the origins of cancer only fuels their negativity.

Sarah, as ever the wise one, has always called cancer "the Wild Card": after her mother was diagnosed with bowel cancer (which had already spread to her liver by the time of diagnosis), we both knew there was no reason for her to have it. No one could have lived a more faultless or austere life, as poor as she was. There are times when these things just happen, and all you can do is make the most of life in those circumstances, and not waste precious time guiltily seeking answers to the question so many cancer sufferers ask themselves; "Why me?"

A word from her indoors..........

Hello this is Sarah this time.......quite a few people have suggested that I occasionally share my thoughts with you via the blog and let people know how I am. I apologise in advance for not being anywhere near as eloquent or funny as my other half!

So how am I? I think it is fair to say how I am can change on an hourly basis (!) but I am generally in very good shape. My fundamental belief has been for many years that you cannot always change the circumstances of your life but that you do have a choice about how you relate to those circumstances, or in other words you cannot always change the hand you have been dealt but you can choose the way you play the cards!

Given that this is probably the saddest circumstances I have ever had to deal with (and for those of you that know me really well will know that there have been a few), I feel amazingly alive. The normal highs and lows of life have a greater intensity than in normal circumstances and strangely I notice a lot of things in a new way, like the amazing colours of the trees in the Autumn. Our house is still filled with love and laughter - the difference is that the laughter can often be interspersed with tears at the thought of what is likely to happen in the future.

In terms of Dave, what can I say? It is impossible to express in words the way I feel about Dave. We are, and always have been best mates who are also soul mates and we are still very much in love even after 27 years together. I feel that that is extraordinary in itself, but it also makes the thought of losing him absolutely gutwrenching. He handles his illness with the most extraordinary courage and is still a joy to be around every day. As the normal every day things become more and more difficult (and believe me there's only Emma and myself who know how tough it really is at times), he still tackles everything with a smile.

And in terms of Emma well what a little star she is. A great support to her mum and dad, providing endless hugs and not bemoaning that we can't do all the things that we used to do together like swimming and cycling and going to the pictures as a family together. Instead she invents new games like "nick the (walking) stick" to leave her dad temporarily stranded in the kitchen or using his grabber stick as a tickle stick for the cat! She is still working very hard at school when it would be easy to use her dad's illness as an excuse. I am so proud of her I feel fit to burst sometimes and am so grateful for the relationship and closeness we have as a family. I cannot imagine what this whole thing would be like if you were in a relationship or family that was already struggling as the pressure at times is immense and sometimes overwhelming.

So in summary.................all there is to do at the moment is to live in the now and make the most of every day as far as we can which I know sounds very cheesy. When people ask me am I still at work I say "I am this week!" For me there is no future to plan for - to the amazement of many people I work with there is as yet no Christmas for me at a time when they are running around panicking about their shopping and all the "stuff" they have to do!

To conclude this particular post when Dave went to the Bristol Cancer Centre one of the doctors used a Buddhist analogy for life in these circumstances which was that it was like "licking honey of the razor's edge" and this really rings true for me. This may sound strange but at the moment I have everything in my life that I need - the dangerous thing is that on a daily basis I live with the realisation that everything I hold dear to me could be wiped out in an instant.

Aiming for Normal

Sarah and I have often said that one of our aims is to keep things as normal as possible, not just because we want Emma's life to remain as close to normal as possible, but also because there is some comfort to "normal" for both of us.

I remember once, quite a few years ago now, when I attended a training course where the delegates were asked to answer the question: What would you do if you knew you only had a year to live? As you'd expect, an awful lot of the answers were along the lines of the familiar "5o things to do before you die" type lists, with quite a few people adding "Leave my job!" in tones of strident rebellion. The thing is, now that I find myself in a similar situation for real, I am not that interested in going for a quick dip with a dolphin (I'm not allowed to swim wearing this pump anyway) or skiing down Everest naked, or any other of those adrenalin fuelled things that you would expect. Yes, I'd like to travel to a few places I haven't seen - I've always fancied India and Japan, as well as the African Safari - and I'd like to perhaps do one bungee jump (although as Sarah has reminded me before when the subject has come up, the harness alone would be too uncomfortable chafing against the wounds I have). But, when I look at it honestly, I think how much I would enjoy just having a "normal" life!

I guess I am lucky to say I have enjoyed the work I do for quite some time now - I really love training and writing courses for me or others to present - so I'm not one of those people who would want to break free from that particular set of chains. And it's fair to say these days that I am not bothered about earning a lot of money either - too much of it seems to me to be a burden, and I have somehow alwaays managed to earn just enough for me to be happy and not have to deny myself or my family too much in the way of either essentials or a few pleasant non essentials. So no, nowadays I would not be answering the question in the way I did in the past. It is more than enough for me to say that I would like to spend as much time as possible with my wife and daughter, to hopefully continue as long as possible to do at least some of the work I love, and to have a life bordering on the mundane. For example, this last Sunday, my sister Sue, my niece Kelly, and her boyfriend Luke came to visit, and there was nothing I could have enjoyed more than the simple walk we all did along the riverside path in the cold autumnal sunshine surrounded by the multi coloured leaves on the trees. To hear my family laughing, and to talk about the future of two young people, is, when I give myself the chance to stop and think about it, one of those delightful little miracles, the likes of which can occur every single day.

So we continue to aim for normal, even though we are all made aware in a number of small ways that things are not normal. For example, I am now able to write this blog on my laptop computer downstairs because I have finally gone and bought myself a wireless router. That is pretty normal, I know. But the reasons for doing it now are that I was finding it increasingly uncomfortable to write on the PC upstairs, due to the fact that I had to kneel whenever I was writing as opposed to sit in the chair, because to sit was simply too painful. In addition to which, I have to be practical and recognise the fact: if my illness continues to develop as it has over the last few weeks, I will in the near future be unable to tackle the stairs at all, and so I had to install the wifi if I want to continue blogging and working. So now, I can stand here in the kitchen, laptop on the worktop, and write in relative comfort.

Or, as another example, as we sit around the TV on a Saturday night, watching a dvd or some reasonable show on the box, I give out the occasional moan, or suddenly have to stand because the position has become too uncomfortable for me to be able to stay put. Every time that happens, both Sarah and Emma look away from the TV screen to me, the concern etched on both their faces, and I am left to think how the mere act of standing has become a potential reminder of the future none of us wants to really have to consider.

Almost every "normal" task has a new dimension of abnormality to it, a constant reminder to both me and my darling girls that unfortunately things are not normal. Should it come to the time when I am permanently wheel chair bound, or (as may be the eventual case) bed bound, the normality will have disappeared entirely. I find that possibility too hard to think about really. Not for the sake of myself, but for the simple fact that both Sarah and Emma are going to have to share the house with a person they love dearly who is physically only a fraction of the person he used to be. I have spoken to a couple of friends who came to visit, and I can talk about my illness and my beliefs about it and the possibility of something miraculous happening for me to recover, but if they raise the subject of how the two people I love most in all the world will cope with me being heavily sedated in the house, or even just lying in bed on the ground floor without heavy sedation as they try to carry on their lives around me, then I just cry, unable to voice what I feel about the pain they would experience in that eventuality. Yet Sarah and I have had to discuss even that, and although my preference would be to be out of the way, in the hospice, Sarah's preference is to have me at home for as long as possible.

That is why, right here and right now, every single thing that I can do that helps to maintain a possibly unreal normality, I will do it. It is why, when I drop something on the floor, I want to pick it up myself - because that would be normal wouldn't it? Or it is whyI am so determined to dress myself, or (as my palliative care doctor describes it) I am so fiercely independent when it comes to my care routines, or why I want to go to Sainsbury's with Sarah to do the weekly shop, or walk into town with Emma when she wants to buy a book, or anything else. It's not all my natural (genetically derived) stubborness. It is my desire to cling to the normal for as long as possible.
I don't really doubt any new set of circumstances will eventually become normal - we humans have a remarkable tendency to adjust to sudden changes and for them to quickly be regarded as the new norm. But I do so crave for the times when I could see my daughter laughing at an episode of TV Burp, or see Sarah smiling at me when she comes home from work, and it not be tinged with a sense of loss.

FAQs

There have, during the months and years of my illness, as well as the short time since this blog has been on the web, several questions I have been asked that have a strong consistency to them, which has lead me to include this section. Not yet knowing how to change the order of any postings, this will appear wherever it does, and not remain, as perhaps it should, somewhere near the top for people to read easily.
One of the most frequent questions, especially in the early days of my illness was: How did you know/ What made you go to the doctor in the first place? (I particularly wanted to write about this, because, although it contains a little graphic detail, I want to encourage anyone who is experiencing any symptoms to go and get it checked out. It can be very easy to talk oneself out of going, through either embarrassment, or simple fear. The earlier this illness is caught, the better the chances are that people survive and even avoid the need for surgery. So if anything like the following is going on with you, or someone you love, PLEASE check it out with a doctor!)
Those of you with a delicate disposition should look away now!
Well, a few years before all this (back in about 1996 I think), I went to the doctor because I suspected I had piles (or haemorrhoids) because I had notice some bleeding from my bottom. After a brief examination the doctor concurred, and I was given some pessaries to insert that would clear up the problem. And they worked, for a while at least, but after just a few months, the symptoms of bleeding started again, and, being very blokish about going to the doctor, and feeling I knew the diagnosis based upon my previous experience, I just decided to buy some cream from a pharmacist and self treat. And that also worked. This went on for a few years or so - there were long periods where there were no symptoms at all, and then there were times when I had to go to the chemist's again to buy the necessary. Once I went to the doctor in about '98 or so, told him my symptoms and history, and was prescribed pessaries again without being examined - something I wonder about today - but, once again, the pessaries worked. Then in about 2002, it all stopped for quite a while. When some symptoms came back in 2005, I merely thought it was the return of the piles and that I shoud take the cream again and all would be resolved. But this time the creams didn't make much difference. Then, one very strange day in '05, I felt very suddenly extremely faint and nauseous, began to sweat profusely and felt terribly weak. This was followed by some horrendously explosive diarrhoea, and thinking that I would die as I sat on the toilet. But the strangest thing was, after the event, all the bleeding from my bowel ceased, and it was not until January 2006 that it returned. Once again, being a bloke I self treated and did not go to the doctor, until one morning in May, when Sarah said would I please just go and get myself looked at.
Thinking I would merely be told once again that the piles had returned, I booked the appointment at my GP's surgery, and on arrival was a little surprised to find that I would be seeing not my own (male) doctor, but Dr. Fiona Forsyth. She listend to my history, and said while it could be piles once again, that it might be wise if she examined me - a "Digital Rectal Examination", or DRE: a term I was soon to become familiar with. After the examination, she told me this: "It isn't haemorrhoids, David. It is quite possibly polyps. These are small growths that can occur in the bowel, and are easily treated during a colonoscopy, where a doctor inserts a camera into your anus, which also has a small device for giving an electric charge to a small area to cauterise any small growths that are there. It is always wise to have polyps treated, as they can, in a few cases, become cancerous. What we now do with any rectal or bowel bleeding is refer you immediately to the colorectal clinic at the hospital for a more thorough examination. If I do that now, you'll have an appointment in a couple of weeks." (Dr. Forsyth has contacted me every few months since that day, and has admitted she was almost certain it wasn't a polyp at the time. She has followed my case very closely since that first step, and I have nothing but praise and gratitude for the fact that she gave me the examination she did, and took the prompt action she did.)
And that is how I came to discover I had bowel cancer. I shall never forget Dr Marcous, a wonderfully chubby and unhealthy looking doctor in the hospital who carried out the next DRE a couple of weeks later saying to me in his heavily Egyptian accented English as I lay prone on the couch, "David, I can see nothing because there is too much blood. But I feel something, and I got to tell you, it not nice." The fact that the face of the nurse in attendance turned instantly from a Nurse Ratchett look-a-like into that of Bambi made me think that I was not in for an easy ride!
Are you still working?
Well, I was still delivering training all through my chemo therapy earlier this year, and stopped doing so about three months ago now. However, one company I do a lot of work for have been so outstandingly supportive as to give me numerous course writing jobs to do, so that I can continue to work from home without having to travel as I used to and stand on my feet delivering courses. I hope to continue like that for a long time yet, and then, when I am recovered, get back to doing what I love to do - training others.
Have they told you how long you have?
Only at the first meeting in December '07 did one of the consultant oncologists mention that "statistically", people in my condition last one to two years "on average". However, being younger than the vast majority of people with bowel cancer (of the 32,000 people a year who are diagnosed, less than 5% are below 55 years old) I could hope to see three years. Personally, I have never regarded myself as a statistic, so I have no idea how long I could last, but intend for it to be a long, long time.
How are you/Sarah/Emma?
This is a question asked almost every time by people who contact us at various intervals, and the honest answer is that it can vary from one call to the next. According to the people who are most familiar with this situation and how people usually react (the doctors in the palliative care team, Caroline our wonderful Macmillan Nurse, our family GP, the District Nurses, and so on) as a family we are doing remarkably well. We communicate how we feel, when we are upset, how we are responding to the latest piece of news, and just try to keep tabs on how each other is coping all the time, and to tell you all the truth, for me, the way Sarah and Emma cope with this is a humbling inspiration to me. If you can try to imagine everything they have had to come to terms with in the last two years or so - from diagnosis, to seeming recovery, to a seemingly impossible-to-recover-from recurrence, and all the treatments in between from chemo-radiotherapy, to operation, and more chemo, and if I then tell you that we are regularly laughing, playing, joking and crying together, you may have some sense of the immense pride I feel for the pair of them.
Is there anything I/we can do?
Again, I think almost every person who has spoken to us in the last two years has said this to us almost every time we have spoken. The sensation of love and support we have all felt has already been gift enough, and the truth is, that at the moment, there is little anyone can do, other than to help out when they can: like our gorgeous and great friend Trish coming round to clean for us the other day because Sarah felt run ragged with all she had to do, or Claire doing the ironing for us, or Paul fitting the handrail to the steep stairwell to assist me getting up and down the stairs, and so much more. I cannot tell you how much a phone call or a letter or a card has meant to all of us, because we know then we are not going through this alone. And, most importantly for me, should I not make it through this alive, I have the knowledge that our friends and family will be there for Sarah and Emma. I have to say, without that certain knowledge, I would find it hard to face the possibility of my death with as much strength as I now can.

Devices, Dressing and a Diabolical Scheme

Our MacMillan nurse is Caroline, and it is she who has arranged for me to have both a mechanical "claw" for picking things up off the floor (after the chemotherapy, my fingers have lost sensitivity - neuropathy they call it - and I frequently drop things!) as well as the sock device. The sock putter-onner is by no menas the sort of thing you'd expect from Q's supply of devices for Mr. Bond - that's it in the middle of the picture - as it consists of a plastic scoop shape and a piece of linen ribbon. However, it is effective, as all I have to do is to place the sock over the narrower end of the scoop, hold on to each end of the ribbon, insert my foot into the wider end of the scoop and pull. It saves a lot of time and indeed pain, as trying to lift my foot high enough for me to put a sock on manually is surprisingly difficult. The mechanical claw is another simple addition, but a great hit with the entire French household, as it means I can easily get things off the floor, Sarah can pinch me from a safe distance to check I am just sleeping and not passed away on the sofa during Holby City, and Emma - well, Emma has found endless uses for it, from collecting the TV remote which is all of three feet away and requires her to change positions to retrieve it, to tickling the cat, Hermoine, whose neck turns out to be exactly the same width as the business end of the grabber, and on to stealing my walking stick when I am caught unawares. My fault, I suppose, as I instigated the game of "Nick the Stick" one evening when we were both having a tickling fight.
The third device in the picture is my morphine and local anaesthetic pump. The cable you can see in the picture runs from the device into the right hand side of my abdomen, and from there under the skin and round my back until it finally enters my cerebro-spinal fluid round the back. The cable, as you can see, is very narrow guage, and being clear plastic, not very visible, which means that I can walk about with the device put in a bag attached either to my trouser's belt, or slung over my shoulder on a strap, and the presence of the pump itself goes entirely unnoticed. The cassette, which is the whiter coloured part at the base of the pump, is the bit that is changed regularly and contains the drug mixture, and this Monday was the most recent change. For what is a seemingly simple procedure, it takes a lot of time and NHS resources for it to be changed as safely as possible. I go to the Day Unit at the hospital at the prescribed time, wait for about half an hour (although on a bad day, that wait can be as high as four hours) until I am escorted round to an operating theatre manned by a theatre nurse or two, an anaesthetist and one of my palliative care consultants, Dr. Hall. This Monday's change was, as usual, uneventful, although when I mentioned the additional new pains I have been getting, Dr. Hall suggested that next time the concentrations of the cocktail be altered. That means that on the 24th, my 250 ml cassette will have 200mg of morphine and go from .25% of bipuvicaine to .275%. It is hoped that this increase will handle the pain, without greatly impacting my mobility; as I mentioned before, it is this local anaesthetic which causes me to lose the funtionality of my legs, and any increase in concentration will mean an increase in my disability. So I will just have to hope that on the 24th, the small increase will not mean I have to go into the wheelchair.
The new equipment has meant that it is much easier for me to dress myself in the morning, and to apply the necessary dressings to my wounds. You see, in the mornings, as Sarah is still at work, she has to be at her school by before 8 a.m. and is therefore usually awake at around 6.30, whereas I tend to wake at between 7 and 8.30. Sorry, let me rephrase that: I get out of bed at about that time. I don't actually wake up until half an hour or an hour later, and tend to be wondering around getting in the way of both Sarah and Emma as they respectively prepare for work and school. I wander around the kitchen, taking drugs, dropping things and speaking monosyllabically. Anything Sarah tells me at this time of day she knows will be forgotten by 10 a.m., so if it's important enough, she puts it on my to do list. She and Emma leave the house at 7.45, and I normally get my first text from Sarah at about 10.30 to check that I haven't microwaved the cat or buttered my underpants before putting them into the toaster. After their departure, it is obviously down to me to carry out my morning ablutions and the routine of putting on dressings and getting dressed.
I think it is fair to say that, these days, there is no angle from which you could view my backside and say that it looks attractive, but I think it also fair to say that I am afforded what must be the singularly most unattractive perspective as I slowly and gingerly squat down on the floor above a carefully positioned shaving mirror. To glance down at the mirror's surface during this slow descent is to be confronted by a globular mass born of the imagination of some Doctor Who Creative Technician responsible for developing the next Big Thing in the time lord's long list of foes. It is, to use the abbreviation loved of many a mysoginist, "fugly" - those of you who are unfamiliar with the term can invent your own definition. It is, however, essential that I view it this way as I can then place the dressings accurately. Once that has been done, I get back onto my feet, and with the new sock device, and the skillful use of the claw, can manage to get dressed and ready to face the world in about three quarters of an hour.
The only interruption to this routine occurred this week, when I rose out of my bed at 7, just as Sarah was on her way to the bathroom to, in her words, "put enough slap on so that my tired haggard features don't scare the children". In the half light afforded by the bedside lamp, I staggered with my usual lack of consciousness towards the hanger to collect my dressing gown, leaving my pump in its usual night time position - under my pillow. It is at such times that the thin and clear nature of the catheter tube has its disadvantages, as Sarah proceeded to walk between me and the pump, not seeing the tube that connected me to it. The result was the pump was dragged from its position and hit the bedroom door with the force created by a woman an a "make - up" mission, and the adhesive tape holding the catheter to my skin and preventing it from coming out of the hole in my side was also tugged free due to the speed of my wife's movements. I felt the hole in my side stretch as the catheter tried to come out, and let out a half drunk yell of "STOP!!" Fortunately, subsequent examination showed that the catheter was still in place, and all that had been dislodged was a small amount of scab like tissue over the entrance site. Sarah only went to work after asking me twenty times if "You are sure there is no permanent damage?" Even when she was at work, her guilt and fear were so great that I received three more texts to check I was fine. In response to the last of these I was tempted to say that I was onto her diabolical scheme to get the insurance money early, and that I was changing the locks to the front door to ensure my own safety.
Now we have just one more working day of the week to go, and, as I have this week been seen by not only my Palliative Care consultant, but also the Macmillan Nurse, the District Nurse (who gave me a thorough examination in our dining room, ensuring that my bare arse was on display to any persons unlucky enough to have a been looking out of their rear windows from the houses opposite) and the physiotherapist (for whom I did an apparently acceptable demonstration of "how I get up the stairs with use of my stick"), I am looking forward to some peace and quiet family time. We also are going to be seeing my sister Sue and my niece Kelly this Sunday, as they are making the long haul northwards to see us all, so I am once more looking forward to being pampered and fussed over!
Next week, the only medical appointment so far booked is with our homeopath, so hopefully there will be little to report. But once again, I'll keep you posted should anything else happen, or the mood to write some more takes me.
And finally, thanks again for all the support and for the wonderful start to my campaign to raise some money for the MacMillan people. I have found it really energising to think that I could potentially make some difference to them by merely writing something!

A Weekend Away

This weekend, Sarah Emma and I went to Robin Hood's Bay over on the East coast. Our friends from way back, Steve and Katy, have a B&B (The Manning Tree: well worth a visit - there you go Steve!) at the top of the bay, with the Cleveland Way running straight past their front door, and they let us stay there for nothing, yet lavish us with all the loving care and attention you could expect from a five star hotel.

Preparing to go away now is a little like preparing to go away when you first have children: there is so much to pack, so many eventualities to be considered, that it requires a great deal of planning and double checking - both skills I am sadly lacking. Add a certain lack of my usually razor sharp awareness due to the drugs, and you have a recipe for potential disaster. Fortunately, Sarah is still capable of organising me, and ever since I once left all my drugs on a taxi in Florence (a tale I am sure you'll have heard by now), is only too willing to double and triple check that I have all the necessary equipment with me. The necessary for this weekend being: colostomy supplies (bags sufficient for two days, plus a few extras in case I happen to eat or drink something that disagrees with me, because if it disagrees with me these days NOTHING in the immediate vacinity is safe), drugs (all kept in a plastic box together so that they are easy to find), walking stick, batteries (for my morphine pump, as to be without replacements would result in me having to be taken to hospital within a few hours incoherent with pain), emergency phone numbers (doctors mainly), a sheet to lay on top of Katy's bedding (which is antarctically white and might never recover from my external tumour's seepage should it find a way around the dressings) and bags of gauze, specialized dressings, antispetic wipes, saline solution and the kitchen sink.

On Saturday morning, we collected Emma from her sleepover at 11, and drove to the Bay. This in itself was a bit of a test, as on the trip to the dales the other week, I found sitting in the car awkward as the pains in my groin protest at me being folded in two and having the seat belt across my lap pressing into me. The sores on my backside can be prevented from having to spend all the trip pressed into the car seat by my placing a folded jumper underneath my thighs, lifting the sensitive areas off the point of contact with the seat, but the pains in the groin are a little harder to manage. However, with the aid of a couple of extra boosts of morphine and anaesthetic from my pump, and one stop to let me get out and stretch my legs for a few minutes, we were able to make the hour and ten minutes trip without me suffering any great deal.

As with the dales, the Bay has always been a place Sarah and I love to visit, as there are the cliff top walks, and the beautiful and strange rock formations on the beach were always something of an attraction to Emma when younger, and we'd often walk along the beach to Boggle Hole searching the rocks for fossils before traipsing back along the cliff-top path. The steep descent into the Bay was beyond me on the first afternoon, as the use of the booster had left me too unstable to walk down the slope without falling over - so unfortunately I had to settle for watching Steve prepare our evening meal and going down the pub with he and Paul at 4.30! (I've been taken off the nastiest of the antibiotics now, metronizadole, which is, I am told, chemically similar to the drug they give to recovering alcoholics. When taking it, even the sniff of alcohol could result in projectile vomiting, so I have wisely been off the beer whenever I've had the infection necessitating the metronizadole. Now I am on a low dose of flucoxacillin all the time to prevent the infection recurring hopefully, and that allows me a beer. Hurrah!)

We sat down to eat at about 6, Sarah, Emma and I, Steve and Katy, Claire and Paul, who'd also come over from York for the weekend with their daughter Hattie.

It is, I should say, quite possible for Sarah and I to sit down with friends, and the topic of my illness not be raised in the conversation - at least when I am present: I know that sometimes, usually when I have departed to go to the loo, Sarah is bombarded with a sudden rush of questions people have not wanted to ask while I am around, usually of the "How-is-he-really?" ilk. But this evening, once Emma and Hattie had left the table to catch a bit of Strictly or X Factor, it did come up. Sarah and Claire were discussing in particular the language that is used about cancer, and how much it is the language of war.

A while back, Sarah read the book by John Diamond, the BBC journalist and first husband of Nigella, who wrote a column on his cancer experiences and took part in a documentary chronicling his illness. It was he who Sarah remembered as first highlighting for her the use of all the combative language. Cancer is always, it seems, a fight, and you (the victim of its onlsaught) have to be "brave" and "fight it", and if you are then you can "beat it". Ever since my first diagnosis, I've always been uncomfortable with that language, and I think it is because it can create a feeling of pressure as well as an all too easy sense of failure. It's as though those who do not "win the fight" have somehow been lacking, have not fought hard enough, or done everything they could, or, worst of all, they have eventually capitulated and "given up".

My apporach has always been to attempt to somehow be inclusive of my cancer, to treat it as something I created (for whatever reasons, as I mentioned in the bit on attitude). To fight it would be like fighting myself, or at least fighting something I have been somehow responsible for creating. When it came back last year, both Sarah and I did both say at first, "Well, it looks like this bastard really does want a fight!" But I still cannot use that language comfortably.

So I thought I'd just say a bit about how I do handle the illness, and what I am doing that enables me to hold onto the belief that survival is possible.

First off, there is the meaning of the word incurable: to me it means that the doctors have just reached the point where they have to say "I don't know", and not that there is no cure somewhere.

Second of all, there is the homeopathist we see: I don't know if homeopathy works or not, but she is giving me some stuff called Zeolite, which apparently has a reputation for being a good detoxifier as it attracts a lot of negative ions in the body and takes them away, much like antioxidants in red wine and tea are said to do.

Then there is the meditation and the visualisation: I spend a lot of my waking time visualising my daughter's graduation from university, my 73rd birthday, and Sarah and I walking together hand in hand on a beach near Perth in five years time.

Then there is the dietary stuff I picked up from the Bristol Penny Brohn Cancer Centre when I visited. By no means do I stick to it rigidly now, but I do try to eat fruit and vegetables more often, try to avoid processed foods, and, even when I am off the antibiotics, avoid the alcohol.

And there is my Best Man (in many senses) Stuart, who is so determined to see me recover he is buying Colloidal Silver and nutritional supplements for me by the bucket load (based upon the advice of a woman with a pendulum apparently!)

So that's what keeps me believing - it's not that I'll be fighting it this way, but rather this way I'll be around a long time, and I'll be around a long time either with or without cancer.

And that's why, on Sunday morning, I walked down the 3 in 1 slope to the bottom of the Bay and walked back up again having fortified myself with a 100g bag of strawberry bon bons at the bottom of the hill! It's why I loved walking holding my daughter's hand and hearing her voice, or standing next to Sarah with my arm around her, or laughing with them both, or looking at Sarah and feeling the tears come because I love her so much. It's not because I want to prove to my cancer that I am stronger than it and will beat the hell out of it, but rather that, if I am going to live with cancer, I am going to live as fully as I possibly can and not let the threat of pain or falling over or being too weak or being embarrassed or whatever else run the show! It's just living now, and, as I've said to so many people like Claire who love both Sarah and I so much that the thought of us parted, or one of us dying, breaks her heart, now is all there is, and if I am not living fully now, then it's highly unlikely I'll be living fully any time in the future either!

So, I think that's all for today: it's not my intention to write something every day, but I'll do so when the mood takes me or when there is some news. As tomorrow I get given a device to assist the putting on of socks, there may be something to add - a picture at least, as I am curious as to what a sock-putter-onner looks like!

Things I Shouldn't Know at My Age

I've been reminded of a couple of other physical elements I didn't mention previously.
One is that I have a urinary catheter as well as the spinal one, and have had that for a couple of months now too, due to the size of the tumour on the prostate preventing my natural flow. At first I thought this would require me to have a bag strapped to my leg, slowly filling up each hour and ruining my usually high standards of sartorial elegance as I would need a pair of baggy trousers to accomodate my production of natural by-product. Fortunately, I had a knowledgeable doctor who gave me the choice of having a little tap fitted at the end, so I could control the flow and not have to have the bag (although have the option of fitting a bag at night - never having to get out of bed to visit the loo being a blokey idea of heaven). What I didn't know is that it would be replaced every twelve weeks, as the balloon holding it in at the bladder end can deteriorate. This involved a visit to the hospital and a blonde nurse spending far too much time over my nether regions trying to stick a rubber hose in the business end of what used to be a highly effective piece of equipment. I certainly didn't think that, at the youthful age of 47, the attentions of a gorgeous blonde in a nurse's uniform would result in absolutely no response from the small chap (honestly, very these days) and gasps of a definitely non - ecstatic nature from yours truly!
Still, it does have its advantages: once recently when I was off the antibiotics for a while and able to drink alcohol, I had cause to visit the gents in a pub where me and the girls were enjoying lunch. Normally I'd use the cubicle rather than the urinal, but it was occupied, and as the pub wasn't busy I figured I'd be safe letting my plastic hose out into the fresh air. Half way through, a small lad (about 8 or 9 I'd guess) came in and unzipped. He looked steadfastly ahead at first, but when he glanced to his left and caught a glimpse of my plastic todger, he did a double take and began to fearfully strain himself in an attempt to empty his bladder as quickly as possible. I still imagine him running out of the gents to his parent's table to tell them a cyborg was urinating in the pub's loos, and him getting a thick ear for telling porkies.
I also never expected to become an expert on sanitary towels. However, they happen to be a highly effective addition to my dressings, preventing any of the strange products that emanate from my crater-filled bottom getting through my trousers and causing me to look not only slightly handicapped with my walking stick, but also incapable of stopping damp patches appearing around my non-existent rear passage. Ladies, all I can say is you have my sympathy! Having to wear them all day and night, I can only say they are effective but uncomfortable to an unimagined degree. Mind you, I used to think that bit about the wings and the "highly absorbent core" was all bollocks, and am pleasantly surprised to discover that not all marketing speak is a pack of lies! It turns out that core is really absorbent, although Sarah finds my marvelling at this fact a little distasteful, and, let's face it, more than a little surreal. Talk about "Conversations You Never Thought You'd Have" - husband and wife comparing and discussing which size would best suit him must rank pretty high in the weirdness stakes!
Just to also say thanks to all those people who have sent me some very supportive messages since the appearance of my blog, and for all of your love too. I'll be back again soon!

November 2008

I have had the spinal catheter (intrathecal as the doctor's call it) for a few months now. A 250ml cassette containing 200mg of morphine and 0.25% solution of a local anaesthetic called bipuvacaine is attached to a small(ish) electric pump that sends the solution directly into my spinal fluid. I can control both the hourly rate at which it flows, and give myself a sudden "boost" of juice if I need to.
In addition, I am taking some oral medication: oxycodone, in both liquid (fast relief) and tablet (modified release) form, amitryptaline, paracetamol and ibuprofen.
All of this together means that my pain is relatively well controlled. I can sleep most of the night without interruption (only getting up to go to the toilet as opposed to getting up to dance around the room in various states of agony), and during the day I can function almost normally.
I say almost, because one of the side effects of the spinal catheter is that I lose sensation in both legs. For some reason (and the palliative care doctor, Anne thinks it may be due to both the location of the larger tumour mass and the location in my spine of the catheter), the loss of sensation is greater in my left leg than in my right. After a single boost, my left leg not only goes completely numb, but it also can no longer support my weight, requiring that I walk around with the aid of a stick. It is forecast that my pain will increase, and the dosages of drugs in the cassette will increase accordingly, resulting in me eventually being unable to walk around at all - initially for part of the time, and ultimately permanently. In order to stave this off for as long as possible, I am probably putting up with more pain than I need to, but the compromise between the pain management and my independent mobility is one I am at the moment happy to make.
The "sores" on my backside continue to grow, and it must be said are looking uglier and more threatening with each passing day! My once pristine arse is now positively lunar in its appearance as the tumours break through the skin and make for daylight.
Sarah is dressing the wounds at least once every day, and in recent days they have begun to bleed a little more, adding to her anxieties about what is actually happening inside me. In my right groin, there is another lump, which occasionally bleeds and is pressing against my swollen scrotum causing some chafing and soreness. The one on the left of the groin is at the moment still small enough to not create any problems.
I have what is called lympodoema, where my legs have swollen due to the poor flow of lymph drainage, and this has to be massaged every day to alleviate the swelling - a pleasant enough experience for me, but just more hard work for Sarah. She also applies some emollient cream to my legs as the skin there is degrading, getting extremely dry and flakey, and easy to puncture. This apparently heightens the risk of infection to me generally, which with a weakened immune system from the lymphatic cancer, poses another threat to life. Funny how the doctors seem to worry about this kind of thing, when in truth I am to their minds only the "walking dead" anyway.
In the past week or so, two new pains have arisen: one on the left side of my pelvis, just above the groin, and the other on my right. If I feel the area immediately around the pain sites, it is rock hard, which is either due to mere tumour presence, or a side effect of the lymphodoema. Whatever it is, it bloody hurts at times, and needs a quick push of the booster button so that the drugs can work their magic.
So all of that is the physical update.
Now for the emotional!
Sarah is feeling tired and, naturally, sometimes extremely upset about the whole thing. We had both been saying we were on a plateau recently, thinking not much was going on, but the truth is that the tumours on my backside have been constantly growing, and the pain has been steadily increasing. At times, she can burst into tears when confronting the probable outcome of all this, and the nearer the possibility of my needing a wheelchair becomes, the more real my eventual death becomes for her. She is still going to work, because we both feel that, currently, to be sat at home staring into each other's eyes is going to be of no use to either of us. Our weekend in the dales was both pleasurable and confronting for her, as it has always been a part of Yorkshire we love, and has been the location of many of our favourite walks in the hills. For us to be there with me unable to walk more than a few hundred yards, very slowly, hammered home the contrast between me a few years ago, and me now. For her to have to face the prospect of being alone, and the prospect of watching me fade in front of her, can drain her of all energy and hope in an instant. It's one of the reasons I keep telling people: cancer is much harder for the person watching a loved one suffer, than it is for the actual cancer patient.
Emma is, being younger, able to separate her life from her father's cancer most of the time. It's amazing to me how resilient and how positively cheerful she can be - and she is actually choosing to do that! She told me not long ago that while the circumstances were, in her words, shite, she was still trying to be happy. That having been said, she frequently wants to be held and cuddled these days; it is one small reassurance during the sad saga for her.
And me: well, Sarah told me off yesterday for saying on the phone that I was fine, and doing OK, when at the time I had just been bent over the kitchen worktops in agony waiting for the booster to take effect. But that is how it is with me: I think that if I tell people over the phone that I am in agony, that is nothing more than moaning and whinging, and there is enough of that about these days! I am still convinced: if I die from this, I was meant to and I am merely being given a job promotion as my services are required elsewhere. If I don't die from this, it will be due more to the whimsy of fate than anything I have done that is outstanding, as although I meditate and visualise daily, and although I believe in the power of the mind to influence healing in the body, I am not yet arrogant enough to think that such a miracle could be conjured up by me alone.
What gets me through each day is the fact of being present: I am more here these days than before, and I can see the thousands of little miracles that make up my life and my world far more clearly than I could before I became ill. And I have a life that is so ridiculously full of love, from my wife and daughter, from my friends and family, that to complain about it seems to me to be a bit churlish.
So that's all for this post: I am going to be getting a new cassette in a few days time, and have a doctor's appointment with the Palliative Care Team in three weeks or so, and I'll keep you all posted on how that all goes.
Feel free to send any messages or comments!

About Attitude

Many people have told me I have a positive attitude towards my illness, and many people in my situation have no doubt been told by family and friends that you "have to be positive!"
Now, first off, that can be a bit of a burden: having to positive all the time is a great stress for people and in my humble opinion, bloody impossible. Second off, if I wanted to advise someone on how to relate to an illness like cancer should they ever have it, to say "Be Positive!" is actually of little benefit or support. If a person has to Be Positive all the time, it seems to deny the possibility of feeling any other way, and, God knows, if you are ever in the same situation, then you would probably understand that the one thing you would not feel all the time is "positive".
For many people, being positive is like trying to look at everything that happens through rose tinted glasses, analagous to saying, after being hit in the head by a brick, "Ooooh! My goodness! What a lovely brick that was, and what a delightful experience it was getting hit by it!" That is not being positive at all, but being bloody stupid. Being told you have cancer is one heck of a brick to be hit by, and the intelligent response is NOT to go "Ooooh! How wonderful! I have cancer, and what a fantastic opportunity having cancer is!"
So if people tell me I am being positive, and think that means that I do not experience sadness, futility, powerlessness and anger, then I am afraid they are wrong.
My attitude to my cancer, from the very first diagnosis in 2006, to the present day, can be summed up as this:

1. I can either be resposible for having cancer, or I can be a victim of it. In other words, I can think this is just God getting at me, or I can think that for some reason, a part of me decided to give me cancer. If the latter is the case, then I at least have some power in the situation. If I did this to myself, then I can also undo it. If a part of me (my subconscious, say) has given me this cancer, then it must be for a reason, and if I can find out what that is, I can probably make myself well. If, however, a part of me that is deeper and universal (like for example, my soul or universal consciousness) has given me cancer, then that too is for a reason, and I may either recover or not, depending on what that reason is.
2. My behaviour in the present is a function of the future I can see for myself, and if I can see the possibility of survival, then I will behave always in a manner that is consistent with my surviving.
3. I always have a choice. Every moment of every day, I can choose how I respond to having cancer that is potentially incurable.
4. A choice can only be made when all the possible outcomes have been faced. I cannot choose to live if I am simply doing so because I am scared of dying, because that is denial. I have had to face the genuine possibility of my death, and been prepared to choose that as a possible future without turning away from it. In that way, I can choose to believe I will survive. I know that sounds a bit odd, but consider it this way: a person who cannot be bad, because they fear the consequences of it, cannot be said to be choosing to be good! They are only being good because of the fear they have, and so are in fact entirely constrained! To be able to choose to be anything, you have to be able to face being its opposite; if not, you are just being constrained.
5. Every emotional response is valid. It is perfectly normal to cry in this situation, as well as to be angry, frustrated, upset, wondering why, and so on. If you deny any of those emotional responses as being acceptable, then you become twisted and forced into something called "being positive", which, let's face it, has to be unhealthy.

So, when people call me positive, they are only partially right. I have chosen to be responsible, and aware that I can choose my responses every moment of the day. I can only appear to be happy, because I have times when I have also allowed myself to be sad. I can only allow myself to experience this stage of my life as a powerful gift for making me appreciative of every aspect of my life and the world around me, because I have also allowed myself to feel pissed off and frustrated at the prospect of dying.
That has been the power of meditation for me - to experience all the possibilities as well as to visualise all the possible outcomes and choose the ones that give me most power in the here and now.
And I have been well trained in developing responsibility and choice by my experience of years of programmes with Landmark Education.
Without meditation, and without my training in the power of generating my responses to the circumstances, I would not be appearing positive. I'd be a wreck, bemoaning my fate, and constantly crying about the injustice of it all - because if I am perfectly honest, there are people who are far less happily married, far less happy generally, and a damn sight bloody older, as well as a lot less loving and peaceful, who this could have happened to!